HHS announces new draft standards to improve the monitoring of health data by race, ethnicity, sex, primary language, and disability status, and begins planning for the collection of LGBT health data

HHS Secretary Kathleen Sebelius today announced new draft standards for collecting and reporting data on race, ethnicity, sex, primary language and disability status, and announced the administration’s plans to begin collecting health data on lesbian, gay, bisexual and transgender (LGBT) populations. Both efforts aim to help researchers, policy makers, health providers and advocates to identify and address health disparities afflicting these communities.

“Health disparities have persistent and costly affects for minority communities, and the whole country,” Secretary Sebelius said. “Today we are taking critical steps toward ensuring the collection of useful national data on minority groups, including for the first time, LGBT populations. The data we will eventually collect in these efforts will serve as powerful tools and help us in our fight to end health disparities.”

Under the plan announced today, HHS will integrate questions on sexual orientation into national data collection efforts by 2013 and begin a process to collect information on gender identity. This plan includes the testing of questions on sexual orientation to potentially be incorporated into the National Health Interview Survey. The department also intends to convene a series of research roundtables with national experts to determine the best way to help the department collect data specific to gender identity.

“The first step is to make sure we are asking the right questions,” Secretary Sebelius said. “Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded.”

The proposed standards for collection and reporting of data on race, ethnicity, sex, primary language and disability status in population health surveys are intended to help federal agencies refine their population health surveys in ways that will help researchers better understand health disparities and zero in on effective strategies for eliminating them.

The race and ethnicity standards, for example, will provide additional categories from which racial and ethnic differences in health care and outcomes can be examined in more detail, particularly among Asian, Hispanic/Latino and Pacific Islander populations. The disability standards would consist of six items that are already being used successfully in the Census Bureau’s American Community Survey. It is intended to improve researchers’ ability to monitor health disparities.

“These new data standards, once finalized, will help us target our research and tailor stronger solutions for underserved and minority communities,” added HHS Director of the Office of Minority Health, Dr. Garth Graham. “To fully understand and meet the needs of our communities, we must first thoroughly understand who we are serving.”

In anticipation of these efforts, HHS, over the past year, has consulted with federal agencies, requested recommendations from the HHS Data Council, and held listening sessions with relevant community stakeholders. The public may submit comments for the draft minority data collection standards at www.regulations.gov under docket number HHS-OMH-2011-0013. Public comments will be accepted until August 1. Information is also available at www.minorityhealth.hhs.gov/section4302.

Under Section 4302 of the Affordable Care Act, the Secretary is required to ensure that any federally conducted or supported health care or public health program, activity or survey collects and reports data, to the extent practicable, on race, ethnicity, sex, primary language and disability status, as well as other demographic data on health disparities as deemed appropriate by the Secretary.